This blog is for those who suffer from Alzheimer's Disease,
FTD and forms of dementia, caregivers, friends and medical professionals that want to share their feelings, thoughts, encouragement, vent and open how they cope with this disease. I was diagnosed in 2004 with the early stages, and quite frankly it scared the beegeebees out of me. 2007 PET SCAN confirmed all.
Joe

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Tuesday, July 28, 2015

It saddens me to tell you that my friend and cohort in this fight against Alzheimer's passed away on July 25, 2015. It was not his Alzheimer's that took him but his additioal battle with throat cancer. I have known Richard since about 2005 when we met through our blogs on Alzheimer's. I feel the grief the family must fill, but I rejoice that my friend is finally free and able to be happy. I am a better person for having known him, although we did have sharp disagreements. Good Bye my friend and now you walk with the Lord, yes I am jealous.

Every year Alzheimer's claims the lives of over 500,000 people, about 1 every 67 seconds. Where is the real out cry against this. Not the establishment or those groups that placate them and feel a gentle approach is needed. I suffer from the disease and say screw that idea, civial disobidence is the way, with loud marches, letter and fax campaigns and voting those out of office that do not want to fund research fully. How did AIDS get the money, what about the 60 mile marches for breast cancer. How did civil rights get attention and work to help make it a real part of our lives?

Richard was diagnosed in 2001 with this wonderful disease, Alzheimer's. He outlived the normal life span of 2 - 10 years, by 4 years. Maybe if he had not had Alzheimer's weakening his body and taking it's pound of flesh, he may have not gotten cancer. Food for thought.

Saturday, July 25, 2015

Alzheimer’s or Dementia: What’s the Difference?

Alzheimer’s disease is the most common type of Major Neurocognitive Disorder, formerly known as dementia. Learn more about the difference between Major Neurocognitive Disorder, Mild Neurocognitive Disorder, and the pre-symptomatic phase of Alzheimer’s disease.

Bill looked at his father, Walter, who for the third time was telling us about the great times he had in the army after he enlisted around 1950. Walter became a successful engineer who worked productively into his mid-70s. When he experienced increasing forgetfulness, he recognized the need to wind down his career. He moved into the friendly and stimulating environment of a local assisted living facility’s memory unit. His life there was a good one. His close family relationships continued. He enjoyed detailed memories of the past, but recent events no longer made a lasting impression on his mind. Bill asked me, “What is my father’s diagnosis? Is he demented? Does he have Alzheimer’s disease? And what’s the difference between dementia and Alzheimer’s disease?”

Everything Changed in 2013

This question often comes up in a clinical interview, and up until recently the answer would have been that dementia is diagnosed when a person has a severe memory problem in addition to difficulty with language or another cognitive function, and that Alzheimer’s disease is the most common type of dementia. In 2013, though, everything changed.

The new psychiatric Diagnostic and Statistical Manual (DSM 5) renamed “dementia” as “Major Neurocognitive Disorder” and added a new, less severe category of cognitive difficulty called Mild Neurocognitive Disorder.

Major Neurocognitive Disorder is diagnosed when disturbance of a single cognitive ability is severe enough to interfere with independence and the disturbance is not caused by drug use, delirium, or various other medical or psychiatric conditions. The cognitive abilities that are tested for this diagnosis are:

complex attention;

language;

executive function (which are skills that enable people to plan, organize, remember things, prioritize, or pay attention to tasks, for example);

visuospatial function (the visual perception of spatial relationships among objects;,

memory; and

social cognition.

Where Does Alzheimer's Fit In?

Alzheimer’s disease is the most common type of Major Neurocognitive Disorder, but it is only one of many possible causes. Vascular cognitive impairment, dementia with Lewy bodies, frontotemporal dementia, Parkinson’s disease, Huntington’s disease, HIV, traumatic brain injury, and other conditions each can cause severe cognitive changes.

Mild Impairment

Mild Neurocognitive Disorder (formerly called mild cognitive impairment or MCI), by contrast, is diagnosed when a less severe cognitive problem exists, manifested as difficulty with one of the six listed mental functions (listed above) that is significant enough to require compensatory activities, such as writing everything down in order to remember. Mild Neurocognitive Disorder, by definition, is not bad enough to rob a person of basic independence. The DSM 5 says that one possible cause of Mild Neurocognitive Disorder is Alzheimer’s disease, but it is only one of many medical or psychiatric conditions that can cause this clinical condition. In other words, Alzheimer’s disease can be present without Major Neurocognitive Disorder or dementia, and dementia can be present without Alzheimer’s disease.

Alzheimer’s Begins Years before Symptoms are Apparent

The DSM 5’s new definitions followed a series of very influential articles published by Alzheimer’s disease researchers in 2011. These experts encouraged us to recognize Alzheimer’s disease as a disease pathology rather than as a clinical syndrome. In other words, to understand that the effects of Alzheimer’s disease on the brain begin many years before memory loss or behavioral changes become apparent. The 2011 expert statement defined three stages of Alzheimer’s disease. The dementia (Major Neurocognitive Disorder) phase is only the final stage. Earlier symptoms are recognizable in a symptomatic, pre-dementia phase (Mild Neurocognitive Disorder). With amyloid PET scanning or various other biomarker measurements, doctors can also determine the presence of Alzheimer’s disease pathology in the brains of people with no apparent clinical symptoms. This is the asymptomatic, or pre-symptomatic phase of Alzheimer’s disease.

The illustration below shows that Alzheimer’s disease can manifest itself with clinical symptoms ranging from none to major. Alzheimer's, however, is not the only cause of Major Neurocognitive or Mild Neurocognitive disorders.

A Diagnosis and an Important Question

When Walter was examined further in our clinic, we decided that his memory troubles were indeed the result of Alzheimer’s disease. He had Major Neurocognitive Disorder and we were unable to identify any other medical or psychiatric disorder that could be responsible for his condition. An amyloid PET scan of Walter’s brain would likely have showed accumulation of beta amyloid, the disease-associated protein found in the brains of people with Alzheimer’s. Bill asked, “What about me? Will I get Alzheimer’s disease?”

What we know now from biomarker research allows us to answer Bill’s question in a way that would not have been possible for past generations. We can tell Bill that he definitely does not have dementia, and that if he has Alzheimer’s disease it is in the pre-symptomatic stage. Occurrence of the disease in his father puts Bill at a small increased risk, so we’ll watch him in the future. For the present, we’ll encourage him to adopt a brain-healthy lifestyle that includes management of chronic medical diseases, stress reduction, healthy eating habits, adequate sleep, plenty of physical activity, engagement with others, and cognitive stimulation. Of course, this brain healthy lifestyle is a good prescription for all of us!

This content was last updated on: Sunday, July 12, 2015

DISEASE:

Sources for this section

ABOUT THE AUTHOR

The information provided here is a public service of the BrightFocus Foundation and should not in any way substitute for personalized advice of a qualified healthcare professional; it is not intended to constitute medical advice. Please consult your physician for personalized medical advice. BrightFocus Foundation does not endorse any medical product or therapy. All medications and supplements should only be taken under medical supervision. Also, although we make every effort to keep the medical information on our website updated, we cannot guarantee that the posted information reflects the most up-to-date research.These articles do not imply an endorsement of BrightFocus by the author or their institution, nor do they imply an endorsement of the institution or author by BrightFocus.

We hear aboutthe importance of having
advance directives(ADs)
in place in the event that we are permanently unconscious, or when illness
becomes terminal and we are no longer able to make decisions on our own. We
urge young, healthy people to think now about what they might want under those
circumstances, to talk about it now with loved ones and to write it down now in
a state-approved form.

ADs are of
particular importance for persons with dementia, because nearly all dementias
are

progressive. Therefore, individuals
with dementia can be expected to decline to a state in which they can no longer
communicate their treatment wishes. They are then dependent upon caregivers,
family, surrogates and physicians to make their healthcare decisions.

Ideally, anyone who is diagnosed with
Alzheimer’s disease has long ago completed an AD, or does so soon after
diagnosis. But reality is never ideal. And even if healthcare decisions are
written down in black and white, what of the other decisions that may need to
be made throughout the life of a person with Alzheimer’s? When is the patient
competent? When is he/she not? Generally, a person is considered legally
incapacitated when two doctors have tested and examined the patient and
completed certificates of incompetency.

When There Is No Advance Directive

When there is no AD and family and
professionals are assessing the competence of a person with Alzheimer’s, the
Alzheimer’s Association urges “the least restrictive alternatives”—in other
words, choose to protect the person’s right to make his/her own decisions
whenever possible.

The Association endorses other
principles that protect what it calls “respect for authority”:

·The wishes of a person with dementia
should be considered whenever possible and until safety becomes an issue.

·Diagnosis of Alzheimer’s disease alone
is not an indication of incompetence.

·Competent people have a right to reject
any medical treatment. Many people with mild or moderate dementia retain this
right, and it should be protected.

·A person with Alzheimer’s disease may
lack capacities to drive, handle financial affairs or live independently in the
community, but retain the capacity to make competent decisions about place of
residence andmedical care at the
end-of-life.

·Appointing a legal guardian for
specific tasks, such as financial affairs, might allow a person with
Alzheimer’s disease to maintain a degree of independence over other matters.

·Being uninhibited, remiss about
hygiene, inclined to mishaps or unable to keep things tidy does not indicate
mental incompetence.

·It may be appropriate to appoint a
legal guardian to make decisions about property or finances, for example, yet
leave other decisions—perhaps personal care, food, shelter and medical care—to
the person with Alzheimer’s disease.

The Importance of Legal Documents

It is important to plan for the
incompetence of advanced dementia via legal documents, many of which vary
according to the state in which the person lives. The most common include:

·Advance directives: Oral and written
instructions about one’s future medical care, including the naming of a
healthcare agent and acceptable life-sustaining procedures, in case one is
unable to speak for oneself. It can take the place of two individual documents:
the living will and the durable power of attorney for healthcare (also referred
to as healthcare power of attorney, healthcare proxy and appointment of a
healthcare agent).

·Living will, which establishes one’s
wishes concerning end-of-life care, the use of life-support systems and the
treatments one does and does not want.

·Durable power of attorney for
healthcare, which assigns decision-making authority on medical matters to a
particular person if one is no longer competent.

·Estate will, which describes how one’s
property will be dealt with after death.

·Plans for one’s future care needs.

·Research directives to allow one’s
participation in research studies.

An Advance Directives Specifically for
Alzheimer’s Patients

In the last several years a new advance
directive has been developed allowing people coping with Alzheimer’s disease
and dementia to document what their lives will be like when they are no longer
competent. Called the “Alzheimer’s Disease and Dementia Mental Health Advance
Directive,” it is legal in some states.

It’s value, however, is not in its
legality, but in its comprehensive look at life with Alzheimer’s. Issues
include where you will live, how to finance your care, changes in an intimate
relationship, when to stop driving and how pets will be cared for. Filling it
out sends a message: I do not want another’s judgment substituted for my own.
Whether or not the document is legal in your state, it is a clear guideline for
loved ones.

A two-page “Values Worksheet” at the
end of the six-page AD helps people think through their options. It can be
filled out and shared with family, serve as a springboard to discussions or
work literally as a worksheet.

Questions of Competency

By documenting your desires and care
goals when you are well enough to make decisions, you remove a burden from your
loved ones and exert more control on future decisions. Early documentation also
prevents questions later about whether you had the capacity to make the
directive when you did. (You cannot make any directive after you become
incapacitated.)

If the person with Alzheimer’s is no
longer competent and has completed no directive, decisions generally fall to
the spouse. If that person is not able to do the job, decisions fall to the
oldest child. A better approach than asking any one person to be responsible is
for the whole family to talk about the person with Alzheimer’s, how he lived
and what he believed in. General agreements about what he would want help avoid
family rifts when a difficult decision—like resuscitation or feeding tubes—must
be decided.

We have the right to make our own healthcare
decisions—even when we have Alzheimer’s disease. Making advance directives is
not only a gift to loved ones, it’s a gift to the person with Alzheimer’s.

·

·

·

Questions? Contact us
at 1.855.837.1592

Presented for Your Information - See Link On Side (Advanced Health Care Directive)

Tuesday, June 16, 2015

I have heard some noise about a study in Australia, where APPARENTLY they claim to have reversed and "cured" some with Alzheimer's. Since this has been very sparce I wonder about it. I will try and get more info and post what I find out.
I am always suspect of this kind of stuff.

Well off hunting I shall go, with blazing speed, you know slow. That is me today and trying to put a post together is difficult. Wife sys when you think of something write it down. Then put ideas together in a post. Easy for her to say, by the time I go to write it down I forget have of it.. I just cleared my desk of so much junk. That is a problem, I write it down in my own language and then look at it and wonder what the hell.

Life sucks now, I keep taking these trips to the floor and out of bed again. All part of the process Nice thig I am forgetting a lot out of the past. Hell remembering this morning is a job. I have a new cat, got her from the pound about year ago, see how fast I remember to share things. She is a calico colored persian. We took her because she was 13, no one wanted her with her health problems. So she is with us and healthier and even is finally beginning to learn how to play. She has dementia forgets things quickly, fits in perfectly.

Saturday, June 13, 2015

It is only with the help of people
who participate in clinical trials that we can learn more aboutAlzheimer's disease and help find
effective treatments. There is the satisfaction of knowing that youare helping others and potentially
future generations. As a study participant in a clinical trial,Alzheimer's patients and their
caregivers have access to a healthcare team who may help youunderstand Alzheimer's better.
Currently three studies are underway to investigate whether a researchdrug called idalopirdine, given in
addition to the Alzheimer's medicine, donepezil, rivastigmine orgalantamine, improves brain
functioning in areas such as memory, thinking and reasoning. It isimportant to note that idalopirdine
has already been tested in clinical studies with promising results.To find out more click
here: http://alzheimersstudy.com/24.htm

Welcome to Living With Alzhiemer's

We welcome you to our world where Alheimer's is taking its' toll. But we work together, the entire family, we love and share while the time is still there. Somedays are difficult and scary but the road is filled with Love & Kindness and God's help, who could ask for more. Hope you visit us often and you can email: jolynn1@cox.net, with thoughts, comments, questions and we will offer any help we can.

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This blog does not accept any payment for the listing of links to other sites nor do we accept or endorse any products, including thoses advertised on linked sites. This blog is simply my journey with the disease of Alhzeimer's and Frontal Temporal Lobe Dementia. We pay tribute in memorium to those that have past from this deadly disease.